There's good news for a change - for the first time since diagnosis way back at the end of 2015, all of my key test results are in the green zone. The consultant declared me to be "normal" - a sweeping statement that I soon corrected, much to her amusement. I've not been "normal" ever since the first time my Mum took me, newborn, out in the pram to go to her local butcher's shop. She parked me up outside, went in, bought her pound of flesh and then went home. A while later she realised that two things were missing - me and the pram! 😳 Mentally-scarred for life, I was.

Anyway, the usual caveats apply - in theory the docs could have given me someone else's results again, but I think I'll give them the benefit of the doubt this time.

I went to Leicester General today for yet another venesection. While I was being bled they gave me my serum ferritin test result for the sample taken prior to the previous venesection performed on 27th April. That result was 427 × 10-6 g/L

Compare that to my serum ferritin test result for the sample taken prior to the outpatient consultation at Leicester Royal only the week before. That result was 366 × 10-6 g/L

That implies an increase of over 16%. With no medication or medical procedure between those tests.

Now, I've taken on board their assertion that they are OK with swings of up to 20% (regardless of whether I'm OK with them), but that applies to things which are supposed to stay fairly constant. In this case, however, we are dealing with something that's supposed to be a reduction protocol. There is no good reason for such an increase, yet I suspect they'll say that it's no cause for concern.

I'm no jerk but I do know the difference between shit and Shinola...

I'll get the result of today's test next Tuesday, and there will be another test prior to next Thursday's out-patient consultation. I reckon that those results will confirm that it's a lab problem rather than anything wrong with me.

It could be an interesting week at University Hospitals of Leicester. If they pin the blame on differences between what goes on at the test labs I'll be lecturing them about calibration, standards, and the like. I'll be on firm ground there. I think that their "swings of up to 20% are OK" assertion is just an arse-covering disclaimer because their labs/tests aren't calibrated against a common standard and hence results from different labs are not comparable.

If I had to put my money on one lab or the other, I'd slap it on the General. They have lots of experience with venesections and associated tests for haemochromatosis patients, and that's why the Royal send me to the General for my bleeds.

But it's the consultants at the Royal who decide on my treatment, and they act on the results of their own tests.

Of course, the usual caveat applies... they can't both be right, but they could both be wrong.

Unless you want to mouseover the charts to see how they look with spurious data removed, hence showing the real trends.

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So far only points for week 28 (12/01/2017) have been removed in the mouseovers. You might recall that I ranted about those results here. The serum ferritin result of 998 from week 15 (10/10/2016) has long been discarded as pure fantasy. With those dodgy results removed there are clear ongoing downward trends to the whites and the newts over the last 4 to 5 months, and the whites are now bang on bottom-limit. But it's not important, they say.

In my opinion, the latest value for the Serum Ferritin (499, week 38, 23/03/2017) looks to be, well, rather convenient, seeing as they were aiming for a target of 500, and the previous three values were 696, 643 and 642. And yes, I did tell them almost exactly that at the consultation, and I also told them that the previous week the blood-letting staff at LGH were quite concerned that their venesection protocol had ceased to be effective. Time will tell if I have to declare that result as dodgy, but for now I'm letting it stand as either a valid but surprising good result or as testimony to data creativity.

But it's not important, as they say.

Yet for some reason they have changed my 6-weekly checks back to 4-weekly.

In case you'd not noticed, I like numbers and charts. They form patterns, patterns which form pictures each worth a thousand words. Keeping track of the numbers (the counts), noting their trends and learning their meanings, is one of the pillars supporting my determination to beat this festrous malady and then to hold it at bay. The more I understand something, the less I fear it.

*** Warning! Paraphrasing in progress! ***

Way back in December 2015 the docs were saying things like "Your blood counts are the most important indicators of your progress, that's why we do daily sampling and testing", in January 2016 it was "Your counts are good enough to go home, but you can't do (insert any meaningful activity here)", and in February it was "You did what? On a train? Bejeesus, you shouldn't have done that, your counts are still too low!"

A month or so later the concept of context was introduced... "Your counts are better, but we have to consider them in context, and that context is bad so we'll keep you in for a few days."

Later still they said "Your counts are recovering nicely, so we'll start periodic testing and monitoring, keeping an eye on the all-important counts. Monthly for at least a year, starting in June 2016. It's immutable. Only then will we consider cutting you some slack and changing to two-monthly testing and monitoring. It's not up for negotiation."

From all that it's clear that counts are important. I was (and indeed continue to be) tested every day I was there, whether as an inmate, a day-warder, an ambulatory or an out-patient. Each and every decision included a consideration of the counts.

But yesterday, after I had queried the low counts which were not discussed a month ago, the story was...

"Your counts dropped but have now recovered. We have to consider them in context, and that context is good so we will ignore and not bother to explain the reasons why the counts were low. They are good today. You really do have to stop attaching importance to the counts. Swings of up to 20% are not causes for concern. Oh, and we're changing the immutable monthly testing and monitoring to six-weekly as of now, not May/June. As before, it's not up for negotiation."

So, in one fell swoop my coping strategy was left in tatters and my diary until June had been trashed. And I'm still not supposed to do (insert many meaningful activities here). Cheers for that, it was a real morale-booster.

I won't burden the main blog with many more boring blood-test result charts, from now on they will be hidden and/or segregated on their own page due to their alleged lowly importance. Suffice to say that last month my white cell count had "swung" from 5.2 to 3.6 x 109 cells/litre (a drop of ~31%) and my neutrophils had "swung" from 3.06 to 2.00 x 109 cells/litre (a drop of ~35%), clearly not within their newly-introduced "20% swing rule" and therefore justifiable causes for concern. It's obvious to me that something significant happened at or just before the week 28 test, but they didn't give a shit back then and continued to not give a shit yesterday.

I have another consultation booked for six weeks' time. Whether I'll bother to give the mandatory blood sample for testing is a moot point - after all, if the counts aren't important, why waste the NHS's cash on unimportant sampling and testing?

I feel a phase of conflict coming on, so I will continue to grind my axe (for defensive purposes only).

The call came, the results are in, and they're not brilliant. They make a mockery of yesterday's result-less consultation, which I am sure would have had a significantly-different outcome if the results had been available for analysis at the right time.

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So, let's see what's what...

Ferritin vs Hb: Well, the ferret-reduction process continues to work while the Hb manages to stay within acceptable limits, but the rate of reduction has decreased significantly:

Neutrophils vs WCC: These are both trending downwards which isn't good. The newts are heading towards their bottom-limit, and the whites are now below their bottom-limit. I suppose it's possible that the lower-than-usual results could be explained by the testing being done by a different lab, but I suspect that the drops are real. If the latter, it could be that my remission has stalled, or it could be that my levels have dropped due to me fighting an infection (which is unlikely considering that I have a low CRP score of 5). Either way, it needs the beady eye of a diligent consultant, and probably further testing, to figure it out:

Of course, it could have been dealt with yesterday, but it was so easy for the consultant to smile it off, blame it on the system and assume that all was still OK. Well, here's the news, Professor... IT'S NOT OK. And that means an unplanned visit to LRI early next week, and another unnecessary cost added to the NHS overdraft.

It's not all bad news... platelets are higher than usual (213), so at least I won't bleed to death any time soon.

You can tell that it's Friday 13th.

P.S. I suppose it's possible that I've been given someone else's results again, they do seem rather prone to doing that for me.

So, with venesections every third Thursday and out-patient consultations every fourth Thursday, it doesn't take a genius to figure out that every 12 weeks the two sessions will fall on the same day. Today was such a day.

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A month ago some bright spark at LRI decided that on such days it would be best to perform just the one set of blood tests, at LGH, on samples taken just before the venesection. Said tests were to cover everything needed for the venesection session at LGH and everything needed for the out-patient consultation at LRI about three hours later. LRI gave me an appropriately-completed bloods specimen form with attached samples bag to give to LGH on the day. It was, allegedly, a fool-proof idea...

I turned up at LGH early this afternoon, they took the blood sample and I handed them the form/bag from LRI. They said that they didn't need the form/bag as they would use their own, so they took away the LRI form/bag for disposal. They also said that they were now using a super-duper digital system on PDAs which would make data collection, storage and transfer much better. I was insistent that the tests would have to cover the requirements of both appointments and that the results would have to be available at LRI by 16:15. They were equally insistent that it would all work flawlessly. I was then bled and given saline as per usual. All good so far.

Of course, in accordance with my expectations and contrary to theirs, it didn't work at all. Nearly four hours later over at LRI the consultant couldn't find the test results in the database, so the consultation was a complete waste of time.

My Friday is now trashed. I have to wait in for a phone call - someone from LRI will be calling the land-line (but not the mobile) IF the results can be found. Oddly, even though they are going all hi-tech with PDAs and the like, and the results (and my records) should be on a database, they are not allowed to send me the results via text or email. For reasons of security the information has to be given verbally. How quaint!

But hey, they DO like to send me appointment-reminders via text - one seven days before each appointment, and another five days later - telling me that every missed appointment costs the NHS an average of £126.

We sure as Hell won't be doing it their way again. To quote Tolkien's Pippin: "Short cuts make long delays."

Maybe I should be charging "an average of £126" for this afternoon's fiasco?

The latest monthly out-patient consultation at LRI was a belter. I managed to prise some interesting info from the consultant, info that clarifies the current ferritin issue.

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So... the dodgy result of the test prior to the first venesection... they admit that it is spurious, but can't confirm whether it's a bad test, a bad result or someone else's result. If it's the latter then I pity the other wronged patient who probably has a result of ~1675 instead of 998 on his/her record and who may have been given treatment based on it. Either way the result clearly wasn't representative of my ferritin level at the time and I've been advised to ignore it, therefore it has been interpolated on the following chart which now shows a clear downward trend and which is up to date with almost all ferritin test results:

I say "almost" because of the second revelation... nobody told me at the time, but way back in July they did a ferritin test and the result was a staggering 2887 × 10-6 g/L, that's over 14 times the upper limit! I know that at that time we were waiting for my Hb to rise to an acceptable and stable level, but that doesn't mean that they couldn't have told me about the test result. I suspect that I wasn't told because my July consultations were with Prof. H.. I've had run-ins with her before and she's always stingy with information, I suspect that it's a "Knowledge is Power" thing. Whatever the reason, I really can't be arsed to re-jig the chart to show where the result plots.

The bloods are holding up fairly well considering that I have a bit of a snivelling cold and that I had a flu-jab a week before. The latest newts result shows as just a minor droop of the line, nothing to worry about:

It's taken a while, but I now have confirmation of which type of AML I was fighting. AML Type FAB M2.

Out-patient consultations at LRI to continue at 4-week intervals, venesections at LGH to continue at 3-week intervals.

My angels take the stage to receive the "We are one team and we are best when we work together" award at about 3:00

The Ward 41 team have been my extended family for so much of this year, I owe them much more than words can say, and I'll never be able to thank them enough for all that they did.

Here are some snaps kindly sent to me by HCA Natalie... the roll-call, the citation, and one of the shift-teams. Hopefully I'll be able to post a few more pics soon.

It makes me feel really sad that some members of the team have already gone on to other things in other places while I've been out, and I've not been able to give them goodbye-hugs and thanks. I'll miss them more than they'll ever know.

Update: Here's another pic kindly sent to me by Ward Clerk Sam, who always manages to miss the photo opportunities:

They scrub up well, don't they? TBH, I didn't recognise some of them with their clothes on 🙂

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